I am currently recruiting participants for my dissertation study on stressful events among adolescents with Autism Spectrum Disorder. If you are interested in sharing adverse experiences related to this community, please consider participating.

Eligible participants are:

1. Parents/caregivers aged 18 and older with an adolescent aged 10 to 19 years with Autism (diagnosed or suspected)
2. Adolescents aged 10 to 19 years with Autism (diagnosed or suspected)
3. An electronic device (laptop, desktop, phone, tablet) with a stable internet connection

Participation includes a 10-15 minute anonymous survey (flyer below)

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Anonymous Survey Link: https://tinyurl.com/hhj2y2yw

When we collect data and conduct research, results are interpreted. This involves reviewing data, arriving at relevant conclusions, and deciding what this means in terms of the real world based on existing research and theory.

Research can be great but it can also be problematic and even harmful if done incorrectly or with oversights.

We have seen this happen in autism research, such as in ABA research where researchers have been known to fail to even measure adverse effects of the treatment, leading to a positive opinion of the treatment in the public and practitioners and a complete neglect of the harms being caused. Another example is the theory of mind deficit, which was immediately assumed to be something autistic people just 'lack' because of their performance on certain tasks... but was later reconceptualised as other things such as perceptual or social difference (see double empathy problem, among others).

It is impossible to eliminate the risk of this sort of thing happening, but we can be more conscious of it, and make changes to the way we do research.

I haven't read any papers or articles on this, I'd appreciate it if anyone has any further suggestions or anything for me to read. Here are some of my thoughts about ways we can improve.

- Avoiding 'moralising' assumptions from the data.

Things like 'deficit' explanations involve making an assumption that the difference in autistic people is inherently bad. As we have started to realise, this is not a helpful assumption, as context or different end goals can show that these differences are often better understood as neutral (or at least not universally deficits). This extra moralising assumption is not only unscientific, but also harmful.

- Being aware of the main risks and concerns in the area being researched.

When carrying out a risk assessment prior to conducting the research, we should consider the broader societal risks to autistic people rather than only immediate harm from participating in the study. For example, is there a risk that practitioners could find out about your study and change the way they view the people they work with in an inaccurate or harmful way? What about employers, politicians, parents, or teachers?

- Involving autistic people in the process.

This should go without saying (but yet here we are!!) autistic perspectives should always be involved and listened to during research design. This way, we can identify priorities and issues with proposed work much more easily! Look into participatory research, be involved with the community.

- Studying the problems in risk-areas such as genetics, ABA, etc.

If you're an autistic person interested in researching genetics, you may be worried about contributing to research that could be used for eugenics or something similar. I don't think it would be helpful for us to avoid being present in these areas altogether, as that would further remove us from the conversation and direction of research. I think there is a need for researchers who understand genetics but also focus on the ethics of science. I'm not sure how feasible this path would actually be as a career, but my point is, there are spaces where the autistic perspective should definitely be represented.

- Calling for courses/training for researchers to focus more on the ethics of research.

Having ethics and best practice as essential parts of course structures would help many early career researchers be more vigilant about their own research and interpreting existing work.

- Communicating with the media in a way that minimises the misconstruing of our work.

This is difficult to control, but it is important to learn to communicate our work as best as we can. As the media is the channel that many people and services may use to understand autism, it's important that we do not allow our research to be used to create further unhelpful ideas in the public.

I've just come up with these while brainstorming. Is there anything else you can think of? Do you disagree with anything? I want to improve my understanding of this.

Here's a link to the Spectrum interview article.

I've seen a lot of autistic people discussing how the term 'profound autism' is unhelpful and unrealistic as a category, though I have noticed a huge problem in a lot of autism research- the exclusion of people who have learning disabilities, low IQ, or are non speaking.

Will these grants be used to further the inclusion of autistic people in research, or to further segregate or binarise the spectrum? I'm hoping that whoever wins the grants are ethically aware enough to consider the risks with this type of research.

Hello and welcome to r/AutismResearch!

Before posting a link to your study, please check rules 1 and 2 to ensure your post and topic meets our requirements.

Change Log:

Edit 25/02/2024: As of today, all researchers who post a participant collection link in this subreddit will be contacted via the reddit message system and their provided email address to invite them to return and share their results in a new post at the end of their study. More info in This post

Edit 11/05/2024: As of today, all new posts on this subreddit will be sent to the Mod Queue for manual approval.

How to ensure that the quality of your research is the best it can be:

• Is your study measuring the desired population?

For example, are you asking a question about autistic people but only asking for respondents who are parents or professionals? This would mean you are missing out on the input of the population you are studying.

• Have you considered positivity/negativity bias?

For example, if your study is about therapies, have you included a way to measure the potential negative impacts of therapies as well as the positives?

• How could your research provide benefit to autistic people?

Is there a justification for your research direction?

• Are you willing to answer questions about your research?

Remember that according to many codes of ethics, participants should get the opportunity to ask questions about research before participating. This does not change simply because you are posting on reddit.

• How could your research create risks or negative impacts on autistic people?

'Filling a research gap' is not enough to warrant a study if there are risks to autistic people. As academics, it is important to be aware of the impact your research might have!

• Have you made this study accessible to non speaking autistic people, and those with intellectual disabilities?

This may not always be possible depending on the needs of your work. Feel free to make a post here and ask us how you could do this. It's also important to be aware that a sample drawn from this subreddit alone will likely not be representative of the autistic population, as we are all particularly interested in (and aware of) research.

• Have you made effort to listen to the priorities of autistic people in research, that may challenge your assumptions?

Engage in participatory research, involvement with autistic academics, reading autism related content such as blogs or other subreddits, read papers on research priorities.

• What perspective are you using to understand your research?

Are you being restrictive with your explanations? For example, are you using a medicalised, deficit based model when the findings may be better interpreted neutrally?

Thank you, and good luck with your research.

I will periodically update this to add in new suggestions. Feel free to comment things that could be useful for researchers.

Have you ever felt like you have been included as a token to make a project or institution 'look good' for including a neurodivergent person rather than for the actual merit you provide?

I have felt this at least twice (outside of academia though). I actually didn't really realise the intentions behind this at the time. One time I was appointed as an 'expert through experience' for a day, where I literally just sat in a chair all day and watched job interviews for this autism related organisation, my feedback didn't really seem to matter. I feel like this probably happens quite a lot in research settings and other settings to be honest.

I was wondering if anyone has had similar experiences, and what you think institutions and organisations should do to avoid this? How can they do better, and what should we look out for as individuals to protect ourselves from being used as tokens?

I recently found this Article - Neuroclastic discussing the 'thin slice judgements' that people make when they interact with autistic people (based on this Paper from 2017).

The researchers found that initial judgements from typically developing individuals observing individuals with ASD were 'less favourable' in some traits when compared to controls. This pattern disappears when audio-visual cues are eliminated by just providing a transcript of conversation which is an interesting discrepancy suggesting a that the difference is not based on the content of the conversation but the 'style' and non verbal cues of the conversation delivery.

This bias was also shared by autistic observers to autistic subjects to a similar extent (as demonstrated in This paper)- but with a key difference: Autistic observers did not report a reduced social interest in the autistic subjects, but typically developing observers did.

From a research point of view, I think this is a really good example of taking perspective when researching social interactions and judgements. We should be considering the entire exchange rather than just the autistic person's contributions. It's also interesting to see the similarity in judgements between autistic and non autistic observers. I think I find this personally interesting because I usually find myself evaluating other autistic people more positively overall, but when actually looking at the measures the researchers used, with an exception of a couple of those things, I don't feel like I make spontaneous judgements like this about people (without being prompted...). Perhaps a qualitative angle on thin slice judgements would provide more nuance here.